This is the Fourth Vulvodynia Guest Book
- Signature:
- Stig H.
- EmailAddress:
- lusekofte@aol.com
- Date:
- 9/11/97
Comments
Hi! My name is Stig and my wife has vestibulities. She
started to experience pain during intercourse in the summer of 1996. She is now being
treated for HPV with injections of interferon. Like most other sufferers from vulvar pain
she is depressed and feels helpless and discouraged. Her Dr. prescribed amitryptilene and
she is now on 20mg. pr day. 30mg gives her bad side effects. The two of us have discussed
what can be causing her pain and the most probable cause we can find is damaged nerves
after a FALL ON HER TAILBONE when she was approx. 10 yrs. old. Because of this I have
started to study neurology on my spare time. It is somewhat complicated material and does
not have much in common with my profession as a pilot. Anyway, what I have found so far
has taught me the ABC's of neurology and I have found something interesting I would like
to share with others.
The brain generally consists of three main parts. These are
the cortex, the subcortex, and the cerebellum. The cortex is the most advanced part of the
brain and is what separates us from the lower animals. It is responsible for thinking,
initiating voluntary movement, being aware of all that goes on around us through our five
senses, and determines our individual personalities. One of the most common causes of
malfunction in the cortex is a stroke. A stroke is the result of depriving part of the
brain of blood, either because of a blockage in a blood vessel in that part of the brain,
or because of a tear in the blood vessel that allows the blood to leak out before it can
get to the part of the brain that it normally supplies. The subcortex lies below the
cortex. It acts as a kind of "gatekeeper" for the cortex. When information is
travelling towards the cortex from the outlying areas of the body, the subcortex filters
out unnecessary information and only sends the important information to the cortex for
further processing. This keeps the cortex from bogging down. The subcortex also modifies
incoming information so that this is processed easier by the cortex. Strokes can also
occur in the subcortical areas just as in the cortex. If the stroke is in an area of the
subcortex that processes incomming information, the patient may have the same symptoms as
he or she would have from a cortical stroke, since the information is being interrupted
before it is able to be processed by the cortex. Sometimes after a stroke in the
subcortical area, incomming information is jumbled up before it reaches the cortex. This
can result in "wrong" information reaching the cortex. For instance, a rare
(fortunately) type of subcortical stroke affects the part of the subcortex that processes
pain signals. When this type of stroke occurs in the subcortex, a patient will feel like
he or she is experiencing severe pain in various parts of the body, even though there is
nothing wrong with these particular parts of the body. The cerebellums sole purpose has
been thought to be for control of all muscle movement such that our muscle movements will
be smooth in motion, both at rapid and slow pace.
The spinal cord is the next level of importance in the
nervous system. The spinal cord is arranged in small bundles of wires, some of which carry
information down the spinal cord to move muscles, some of which carry information up the
spinal cord to let the brain know what is going on with the rest of the body, and a third
type which carry information sideways. Although strokes can occur in the spinal cord, the
most common cause of malfunction in the spinl cord is traumatic injury, such as from
gunshot wounds, diving into pools that are too shallow, and automobile accidents. ( and
tailbone injuries??) ( my comment)
I hope this can help some of you understand your pain. It
certainly helps my wife and me understand more about this devastating condition.
Thank you
- Signature:
- Bdwy.fms (Barbara)
- EmailAddress:
- bdewitz@aol.com
- Date:
- 9/12/97
Comments
Hi. My name is Barbara, and I visited here before, in July, I
think. I believe I neglected to say that I would like to be added to the listserve.
Please.
I have tried the low oxylate diet now since the beginning of
August, with no success as of yet. I spent most of this summer in misery from a
fibromyalgia flare, and though I am over that, I have just been treated with megadoses of
antibiotics for a bout of pneumonia. I can't wait for the yeast to come back.
I have read with interest the comments on depression, etc.
All I can tell you is that not all of us have depression--maybe for some it is the link,
but for others of us, it doesn't seem to be.
I never had vaginal problems aside from chronic yeast until I
had the botched hysterectomy in 1991. Do not recall ever having any injury to tailbone,
but had a spinal fusion in the lower lumbar area in 1973.
Still have no treatment or doctor to help me. So, I just keep
praying for some miracle that will make this plague go away and let me get on with my
life.
This is a great site and I would like to thank you, Dr.
Glazer for putting it up!
- Signature:
- Denise
- EmailAddress:
- agrctrin@magibox.com
- Date:
- 9/15/97
Comments
I need a good MD in the Memphis, TN area and/or the
Atlanta,GA area. Any suggestions or referrals? Please help!
- Signature:
- Denise
- EmailAddress:
- agrctrin@magibox.com
- Date:
- 9/16/97
Comments
I am in need of the recommendation of a doctor in the
Atlanta, GA and/or the Memphis, TN area to treat my vestibulitis. Can anybody help please?
Thank you!
- Signature:
- Marg
- EmailAddress:
- mawest@aristotle.net
- Date:
- 9/22/97
Comments
I am so thankful for this site and all the information on the
internet regarding vulvodynia. I am 29 years old and have been suffering with vulvodynia
for about 2 years. It has gotten progressively worse within the last 10 months. At the
present, I have just started amitryptiline and I am also doing the exercises described in
Dr. Glazer's article "Treatment of Vulvar Vestibulitis Syndrome..." I would like
to thank all the women who have commented. I feel better knowing I am not alone. This
problem has taken up so much of my life and there have been very few friends that I felt
able to share this with. Dr. Glazer, I would be happy to participate in any surveys or
studies. Please add me to the server list. Thank you.
- Signature:
- Wendy
- EmailAddress:
- wlneeds@aol.com
- Date:
- 9/23/97
Comments
I found many similarities with the other women with this
problem - I too have had numerous sugeries starting with a dermoid cyst on my ovary when I
was 13: spinal fusion at 19; hysterectomy at 29; other ovary out at 32; began taking
Estrace after the last surgery: scar tissue MAJOR problem; My vulva pain started after my
last surgery; docotor tried creams, injecting me with something; pain was not constant
only uncomfortable sitting and wearing pants; sex not a problem; not sexually active for 2
years until a few months ago and pain intense! Went to a new Dr. amd she found
"chronically inflamed tissue" did a biopsy no cancer or HPV just chronically
inflamed tissue - still healing - I have more pain now then ever - using estrace cream;
waiting results from Dr. Solomon urine oxalate test.
My Dr. wants me to use steriod creams which I hear everyone
advising NOT to do - but was wondering for short term releif could it do that much harm?
Then I could be looking at the other options (low oxalate;calcium citrate etc.)
Live in Houston, Texas and looking for a dr. if anyone knows
of anyone who has knowledge on this I would appreicate hearing from you!
- Signature:
- Linda
- EmailAddress:
- hlamkin@bwoodtx.com
- Date:
- 9/24/97
Comments
I haven't been offically diagnosed yet but have had severe
burning and irritation for approx 5 months. Have been treated repeatedly for yeast
infection that my physician says has turned into a cellulitis. I have had Diflucan several
times and the symptoms get better for a few days and then are back. Intercourse is out of
the question and I have had several bladder infections also. I have had chronic fatigue
but at present those symptoms are better. I have taken Uva Ursi, cranberry tabs, and
Acidophilus and the symptoms almost went away for approx. one week and then the irritation
was back. I had been eating more sugar than usual and wonder if that might have been part
of the problem. I also tried the yogurt douche. I was desperate enough to try almost
anything. I live in a small town in Texas and would appreciate any input on a physician
that I might could see in the Abilene, Ft. worth Austin, or San Antonio area. I thought it
interesting because I also have broken my tail bone. It's nice to know I'm not alone in
this problem and that I'm not a hypochondriac. Thanks for any help. hlamkin@bwoodtx.com
- Signature:
- worried mom
- EmailAddress:
- cclement@up.net
- Date:
- 9/24/97
Comments
My daughter, not yet 25, was diagnosed with vulvodynia about
2 years ago. She has tried everything (the Cleveland Pain Clinic was the last) and is now
on her way to Mayo Clinic. She has so much discomfort that she has to use a wheelchair
now. She is trying to go to college and work part time and keep her sanity about her. Hers
is a case of "been there, done that". Thank God her husband is very
understanding and supportive, but that doesn't make up for her pain and depression. As she
has put it, Mayo is her LAST stop. I am extremely concerned that she will end the pain
herself. I pray for a miracle for all of you.
- Signature:
- Ellen
- EmailAddress:
- eljohnson@monmouth.com
- Date:
- 9/25/97
Comments
dear howard, this is the best site on the web for me and
hundreds of other women. ... i am 54 years old and i have had vulvodynia since 1984. i
have had two surgeries along with 2 laser surgeries. twice i had part of the vulva
(vestibule) removed and reconstructed. it did not help. the pain after the surgery with
intercourse was almost unbearable! I then had alcohol injections - no relief and the laser
surgeries made me feel worse. i have used cortisone creames, testostorone cream,
antihistimines, anti-imflammatory meds with no relief. i cannot wear any constricting
clothes, sitting makes me feel worse and standing makes the area ache. ... i have started
a local support group with women who have vulvar pain; and, in my area alone, i have found
24 women with the same symptoms: burning, rawness, pain with intercourse, etc. we range
from our young 20's through 80 years of age. ... i am now on elavil, lidocaine and ultram
for pain. .. i feel one of the best parts of our group is the support we get from one
another. that alone is an essential component of coping with this pain, to be able to talk
to women with the same symptoms. btw, we were all first told the pain was "in our
head!" ... i am glad that we now have our own vulvodynia site on the internet. ..
let's all work for more public awareness of vulvodynia which will then lead to more
research on this painful disorder! if anyone wishes to write, i am available. thanks,
ellen.
- Signature:
- Kris
- EmailAddress:
- kris@wongdoody.com
- Date:
- 9/26/97
Comments
Please add me to your list server. This site is an incredibly
valuable tool. I need help sorting out all the information. Ideally, I'd like to find a
list that notes the treatement options available, and the pros/cons of those options. I've
tried the diet, steroid creams, steroid injections, and am now considering surgery. I want
to research before I agree to surgery. Any suggestions?
- Signature:
- Kell hoping to get well
- EmailAddress:
- kharris@bgsm.edu
- Date:
- 10/2/97
Comments
I am coming up on my 5th year anniversairy with
vulvadynia/vulvar vestibulitis. Of course there is no need for a celebration. This
condition has totally changed my life and has become somewhat consuming. I am searching
for a cause and cure like the rest of you which is why I am enrolled in medical school
today. The following sums up the treatments I have had (suffered through): (1) TCA
applications. It is an acid applied to the vestibule; was used in the early 1990's when
the medical community thought vulvar vestibulitis was connected to HPV. Not employed by
most doctors anymore. DON'T let anyone do this to you! (2) Interferon injections. 12 local
injections into the vestibule area. Hurts and gave me flu-like symptoms for a month but no
relief from the pain. (3) Pramasome cream. I don't know why they put me on it, but it
didn't work. (4) Low calcium oxalate diet/Calcium citrate tablets/Glycosaminoglycans (the
whole Clive Solomon's treatment for 3 years. I never found any correlation between my pain
and diet, however, I have talked to several women who did find relief. I still take the
calcium citrate (good for the bones if nothing else), but I eat what I want. The GAGs are
very expensive, too. (5) xylocaine ointment and EMLA. They temporarily numb the vestibule
area and work great for me. I use the xylocaine 2-4 times per day and always with
intercourse. It seems to "reset" the nerves so that I can get longer relief from
pain than what the 1/2 life of the drug should theoretically give me. (6) desipramine. My
dose has increased over the past 2 years to 150 mg. I found it helped a lot. Before
desipramine I could barely sit without pain, now I can at least do that most of the time.
(6) Diflucan 100mg tabs daily for 1 month. I had chronic yeast infections (actually the
whole syndrome started for me with a yeast infection). I no longer have yeast infections.
(7) Pudendal nerve blocks. I have had 2 over the past 6 months. I have felt better during
this time, but it is difficult to say if this is what helped me improve. Several therapies
have been incorporated at the same time, so it is hard to know just exactly what has
helped. (9) Biofeedback. I just started on a EMG-biofeedback regimen (Dr. Glazer's) in
June 1997. I have learned to do the exercises efficiently and can tell a difference in
pain levels. Now I can see a correlation in stress levels (from the outside world) and
pain. I am currently trying to find other stress management exercises that can help
minimize the pain (exercise, yoga, massage, etc. . .) Talking to other women with our
problem also helps during the "down" times. My husband is very understanding,
but he can't understand and empathize like another women inflicted with this terrible
syndrome. Finding a good doctor who is both knowledgable and understanding is also key to
getting better. In the mean time, keep the faith. Somebody, somewhere will finally figure
this thing out. I am in my 2nd year of medical school now, and after I graduate I plan to
do what I can to help find a cause/cure. If anyone has advice to help me out, please email
me.
- Signature:
- judy bickerton
- EmailAddress:
- jbickerton@abraxis.com
- Date:
- 10/5/97
Comments
have been having problems with vulvodynia since a gyn
procedure about one and a half years ago. any information about different ways to treat
this problem would be appreciated. your website is exactly what I have been looking for.
thanks!!!
- Signature:
- Diane
- EmailAddress:
- jecary@magnolia-net.com
- Date:
- 10/6/97
Comments
I have been suffering from vulvodynia for 12 years. I went
through 20 doctors in 5 states before coming up with a diagnosis. Throughout the time I
was searching for a diagnosis, I thought that somehow giving it a "name" would
make me feel better- not so! A "name" without a "cure" seems somewhat
useless. At least I know I'm not crazy as many of those 20 doctors indicated. After one
doctor suggested giving me something to make me "perceive things differently", I
went to my psychologists and said, "Please fix my head because my bottom hurts!"
He assured me that I was not crazy but I'm not so sure I will not end up that way. A word
to the wise, do not even consider a vulvectomy - BEEN THERE-DONE THAT. It was the most
painful event of my life - having a 9 lb. child the natural way included! I like others in
this guest book have broken my tailbone -twice. Don't know if there is a connection.
Although naming my problem has not seemed to help much, hearing (reading) comments from
others and knowing I am not an island is comforting. Comforting is somewhat a strange way
to describe the way I feel when I read of what others have been through because everytime
I do, I weep- I feel your pain just as I know you feel mine. I have recently found out I
also have fibromyalgia. Many with vulvodynia have fm too -not that we NEED anything else.
Some people have had some relief from fm by taking guaifenesin. I am thinking of trying
that if I can find a doctor to help me monitor it. Has anyone tried it? If so did it help
the vulvodynia too? Please add me to your Listserve.
- Signature:
- Colette
- EmailAddress:
- mutiger@sound.net
- Date:
- 10/7/97
Comments
Thank you so much for providing a site for vulvodynia. I am
very grateful for a place to network with others with this problem. I have suffered with
vulvodynia for 4 years. During that time, I developed symptoms of fibromyalgia and was
diagnosed with it in April of 97. I think it is very interesting that these two conditions
are linked in so many of us. I am doing the low oxalate diet and the citrate through Dr.
Solomon's project. I've done both of these for almost two years and have experienced slow,
gradual relief. Also, I am taking guaifenesin for the vulvodynia and fibromyalgia. I'm
interested in hearing from others with both of these problems. Thank you again for the
work you do for us.
- Signature:
- EmailAddress:
- Date:
- 10/8/97
Comments
Just a note to all professionals interested in learning the
"Glazer" protocols for pelvic floor muscle rehabilitation, the only published
protols with demonstrated efficacy in the treatment of vulvovaginal pain. Dr. Howard
Glazer will be conducting a three day workshop at the Second Annual Mettings of the
Biofeedback Foundation of Europe to be held in Davos, Switzerland, March 6-9, 1998. To
register go to: http://www.bfe.org
For vulvovaginal pain sufferers interested in receiving this
treatment please notify your treating professional of this opportunity. Other training
sessions will be offered throughout the USA. If you are interested in receiving training
or would like your treating professional to be able to administer this treatment modality
please email Dr. Glazer directly at howardg@idt.net
- Signature:
- Belle
- EmailAddress:
- ASchick3@aol.com
- Date:
- 10/9/97
Comments
I am overwhelmed by the extent of this web page. I've had VP
for almos 4 years. I have tried a number of suggested treatments with some success.
(Biofeedback and physical therapy, low oxylate diet) I am now taking 60mg. of Paxil daily
and that has given me much relief. I appreciate reading personal accounts though it makes
me very sad. This web site and the VP foundation and the NVA are wonderful for those of us
who need to know that someone is trying to help us. We need to be very strong and that is
very difficult. I'll be visiting this site frequently. Thanks Dr. G.
- Signature:
- PRO
- EmailAddress:
- dprohaska @p3.net
- Date:
- 10/9/97
Comments
Murray2053@aol. It is exciting to find so many women with MY
problem that my GYN specialist told me was all in my head and a result of problems with
depression and marriage (rather than the failure to be intimate interfering with my good
humor and marriage!!) I have not had tailbone injuries but I have chronic illness that
results in organs pressing on my spine and nerve endings. I basically have two football
sized kidneys.I suspected this must be related because as my back pain and sciatic
worsened, so did my vulvadynia symptoms. I have still not been officially diagnosed but my
new GYN is at last taking the symptoms seriously!!! Thanks to the internet I was able to
present what I thought was wrong... since the doctors kept telling me it was not there!
THANK YOU everyone who responded and help spread the word. Channel Six in Philadelphia has
now done a news piece on this problem.
Thank you so much to the people who mad this site! You will
never know how much it means to us who are suffering to know that WE ARE NOT CRAZY AND WE
ARE NOT ALONE!!!
- Signature:
- Chelsea
- EmailAddress:
- mnelson@intercoast.com
- Date:
- 10/10/97
Comments
As I sit here with tears of joy that I am not alone I am also
amazed that this many people are surrering and that so may doctors are totally unaware of
this horrible disease. I am 24 years old and have had vulvodynia for 3 years to the day.
It started with recurrent yeast infections. I went to 5 doctors before I was diagnosed.
The gyn that diagnosed me told me that it was a phychological condition associated with my
Anxiety/Panic attack disorder. I was also diagnosed at the same time with urethera
syndrome(also supposed to be in my head). I have not tried anything other than anti-yeast
meds and creams so far. Yesterday I started taking Elavil 10 mg. The side effects are
strong so far, but hopefully they will pass. I have always been one to think that instead
of covering up pain with meds, one should get the problem cured. Now I just want relief. I
also hink, as many of us do, that I have nerve damage due to chronic yeast infections, as
I still get them according to my doctors. I have a hard time believing that I have the
yeast so much due to a lack of the usual discharge and odor associated with yeast. I also
have had a major history with kidney and bladder infections. I have found that it isn't
the anxiety and depression that causes the vulvodynia. It is the vulvodynia that makes me
crazy! This is also another example of how a lack of research women's health is coming
back to bite the medical community, and unfortunately us too.
Thank you so much to the people who mad this site! You will
never know how much it means to us who are suffering to know that WE ARE NOT CRAZY AND WE
ARE NOT ALONE!!!
- Signature:
- DeAnn
- EmailAddress:
- david@hughes.net
- Date:
- 10/11/97
Comments
Dear Friends, Amazing! I finally have a name for what I have
had now for twenty years. It began when I was 18 years old in 1977. I did have one year of
painless sex but, the pain began after I started taking birth control pills (Ortho Novum).
I also had a tail bone injury when I was nine. Also of interest to me is Judy's comment in
the guest book about the chemical additives PEG, PG, and SLS. My eyes have a burning
sensitivity to certain lotions and makeups, I will research this further. A tip for those
of you who have problems with menstrual pads. The new pads tend to "gas-off"
(release the chemical gasses which have been contained in the plastic wrapping) when they
are first opened. I would open a pad and put it right on and it would cause burning and
itching, and by the end of my period I would be miserable. Now I open the whole pack of
pads and unfold and air out at least five pads at a time. I give them a day to
"gas-off" and no longer have problems. Hopefully you have a family that doesn't
mind the sight! Since I have had this problem for twenty years, my history would be too
long to go into detail. I will try to be very brief. If anyone would like to correspond in
length, please e-mail me at david@hughes.net. After twenty years of misdiagnosis, the
gamut of medicines, surgeries, remedies, and guilt and shame, I can't tell you what it
means to know there are other out there like me. This is an immense relief to my husband
of fifteen years. He's the one who found all of this on the net. Thank you, all of you,
who are here trying to make sense of this painful disorder. I spent 18 years of what I
termed "walking pain", in other words, every second of my conscious life was
spent in pain. When the climate was warm it would be so bad that after I would get off
work I would strip and put on an ice pack. Sex was always excrutiating. I used Lydocaine
(sp?) for a number of years. The problem with that is that it numbed so much of me I
couldn't enjoy the sex. Guilt and shame have been the most devastating to me. I am in the
alternative health field now and realize the toll these two things can take on your mental
and physical bodies. I counsel women to find ways to not feel guilty or shameful for their
ill health. Find family members who are supportive. Now we can educate spouses and
boyfriends. In 1994, after an ovary removal, my health declined to the point of imminent
death. Hormone problems led to subsequent monthly nervous breakdowns which led to immune
dysfunction, chronic fatigue, fibromyalgia, and ultimately to liver failure. All possible
medications were tried, with no success, until my liver was unable to process anything
anymore. Doctors were unable to help me so I turned to alternative therapies, also which
were of no help until I found a wonderful M.D. who had a Reiki practitioner in his office.
This was my last and only hope. My husband would drive me two hours and pretty much carry
me up to the office. I started receiving Reiki treatments once every two weeks. For those
of you who haven't heard of Reiki, it is laying-on-of-hands. Reiki practitioners beleive
God's healing flows through their hands. Anyway, this practice has healed all of my other
illnesses. I learned to do Reiki myself and I now heal myself daily and I teach it to
others. I have a Reiki web page at http://www.hughes-ec.com/org/company_g/reiki/
Whew, isn't that a long address! Now, how does this all relate to Vulvadynia. My vulvar
pain has decreased 75% since I have been practicing Reiki. I have times where there is no
pain at all. Most of the time though there is some pain to the touch which seems to be at
it's peak around the time of my period. I have been studying the Eastern theories
regarding illness and am finding much success in the energy meridian and chakra theories.
These theories seem to get to the root of the illness to create complete healing instead
of the masking effects of modern western medicine. While I have not healed my vulvodynia
100%, I am well on my way. I will probably need some counseling to help me disassociate
sex with pain. I am very interested in the biofeedback and will be giving my M.D. all the
information I can find on it. There is so much more to my history but, this is it in a
nutshell. It would also be of interest to know each woman's blood type. Mine is O+
God Bless you all. DeAnn
- Signature:
- Francine
- EmailAddress:
- fmanddk@worldnet.att.net
- Date:
- 10/12/97
Comments
This website is a great resource. I was lucky in that my
nurse practitioner knew right away what was wrong with me, but she wasn't sure how to
treat me. I went right to the Internet and the first page I found basically said - no-one
knows what causes it and there is no cure... if worst comes to worst, the patient has to
have surgery. Since I'm determined that no-one is going to cut out any part of me unless
it is absolutely the last resort, that was not encouraging news. Luckily I found the NVA
site soon after that.
It's a relief to hear that indeed there are many other
options. I recently received the past NVA newsletters and was encouraged by all the
information they contain. It is amazing how just having information can reduce the stress.
My daily pain is not severe, but the psychological stress of
the constant discomfort and the fact that I now associate sex with pain was more than I
had bargained for. I am fortunate to have a supportive mate.
I've decided to try the low oxalate diet, because I've found
a definite connection between the level of discomfort and the foods I've eaten. Maybe it's
oxalates, maybe it's something else. I know for sure that my body is out of balance.
For what it's worth, I fell on my tailbone when I was 10
years old. I'd also like to add that I'm a black woman, since I've read in a few places
that this is a condition affecting mostly caucasian women. Is this fact, I wonder, or
merely a function of reporting?
Also, for Judy - I don't use laundry detergent at all any
more. I've found a product that washes clothes without detergent by magnetically changing
the ionization of the water. Email me if you'd like more info.
Again, thanks Dr. Glazer for this great resource.
- Signature:
- aileen. It works
- EmailAddress:
- Date:
- 10/14/97
Comments
I have solved the problem of burning and pain with
vulvadynia. No, no doctor helped it was my own trial and error. First stop everything...
no creams, gels etc. Do as little as possible to the area. 2nd. use Aveeno soap only! to
wash. 3rd. Take off the underware and keep on loose pants or wear skirts. 4th. and very
important...start taking acidophilus. I take a 1 capsule 4 to 6 times per day. Mine also
has 2 other "good" bacteria called B. Bifidum and B. Longum. However I think if
you start just acidophilus that would be fine. Do all of these thing ... Stick with it I
believe you will get to a point of relief that can be maintained. No more severe
exacerbations will occur. Possibly, however when you start the regimen I've set forth you
may want stop or minimize coffee, beer and tea. Good luck to all of you I've been there
and now I'm doing a world better. If this regemin works don't ever stop... However you can
eventually wear loose underware. One more thing. No tampex and wear only unscented,
unbleached not dyed kotex pads. I find these at health food stores. and pat dry after
urination.
- Signature:
- Katie F.
- EmailAddress:
- VulvodyniaList
- Date:
- 10/15/97
Comments
Aileen--
If only it were so easy!! Certainly all of your suggestions
are good ones and are listed in many of the sites on the links page. They will probably
decrease discomfort at least to some degree for most women, but I don't think it would
-cure- most women of vulvodynia. I'm sure many, many women reading this site are doing all
of these things and still suffering. Everyone is different. As an example, I can't use any
types of disposable pads, natural or not, they all cause burning. I only use organic
cotton flannel pads (they are washed and re-used) and this has given me much relief during
my period. There are many other suggestions that can help as well, such as rinsing with
distilled water after urination or double rinsing your underwear after washing. Applying
Estrace cream to my painful areas twice a day has also significantly reduced my pain.
Unfortunately there is no one cure or magic formula that will work for everyone.
Especially since there are probably multiple causes of vulvodynia. I'm very happy to hear
you are doing so much better, if nothing else, it gives hope to others. But I would never
want anyone to feel that if they do all of those things and do not have total relief, then
they are alone in this experience and have no other options. Certainly my vulvodynia has
improved with everything I do now, but it has not disappeared.
- Signature:
- Taylor
- EmailAddress:
- Idgara@worldnet.ATT. net
- Date:
- 10/17/97
Comments
Hello,
I've had this condition for 10 years. Like many, it began
with recurring yeast infections, then yeast infections that never seemed to go away. I
went to five doctors in two states before I was diagnosed. I was treated with the basic
creams--micanozole, Gyne-Lotrimin, Monistat, etc. I was put on a "cave-man"
diet--no processed foods, sugars, additivies along with Nystatin--no use. I finally found
a female physician who tried injections of Interferon. The pain was terrible. By this time
sex was practically non-existent. The burning and stinging wereintense. I couldn't stand
the sensation of skin touching skin, any pressure. Then, with the injections each week, it
was impossible to have any physical relationship with my husband. I'm 39, married for 16
years. The last 10 have been an emotional roller coaster. I have had Diflucan prescribed
for the ever-present yeast infections. Just read a release that it can possibly
contribute! I am currently on Elevil (an anti-depressant) which I resisted for over one
year because I am opposed to the treatment, but nothing else seems to be offered. I did go
to a Dr. Marilyn McKay at Emory University in Atlanta about six years ago. I am seriously
considering returning. If ANYONE out there has a treatment, doctor, suggestion , PLEASE
respond. I am so thankful to find this vehicle, yet sad to know there are this many women
whose lives and marriages have been strained, interrupted, and controlled by a condition
many doctors still seem to think is "in your head!" It's living with a chronic
invisible condition. We need a treatment.
- Signature:
- Katie F.
- EmailAddress:
- VulvodyniaList
- Date:
- 10/17/97
Comments
I just want to encourage all women with vulvodynia and all
practitioners interested in vulvodynia to join the listserv. Just follow the link on the
first page of this site for directions on how to join the VulvodyniaList. All of us on the
listserv share information, answer questions, and give support. (Thank you Dr. Glazer and
Dr. Perry!!) Please join us!!
Katie :)
- Signature:
- EmailAddress:
- jpw@bigfoot.com
- Date:
- 10/18/97
Comments
Thank you Doctor for a very needed resource of information. I
can only hope that more medical professionals will start paying serious attention to this
painful condition.
PLEASE ADD ME TO YOUR LISTSERV!!
- Signature:
- Rhonda
- EmailAddress:
- rapa@pacbell.com
- Date:
- 10/18/97
Comments
Hello, My, I had no idea you were all out there. I have had
vulvadynia for four years following lazer surgery. I have been on the low oxalate diet and
calcium citrate, plus glucosimine for two years. Although I have had relief from these, I
still have flare-ups that are really bad. I would loveto hearfrom anyone else who has
hadthis happen to them and what they did about it. I am so sorry to hear from so many of
you that you went through the same troubles with doctors and misdiagnosis that I did.
Thank heaven that my sister saw a program about the VP Fondation and I found a great
doctor who was willing to learn. Unfortunately he has left the state to practise in a less
restricted state where the insurance companies have less power. My heart goes out to all
you . Just remember, we are no more "to blame" for this condition than someone
with polio. There is no shame and no blame. Stuff happens. Rhonda
- Signature:
- kristen
- EmailAddress:
- hovind@aol.com
- Date:
- 10/21/97
Comments
Hi! I submitted an entry earlier and wanted to share my
experiences. I have had vestibulitis for 15 months which started out as recurrent yeast
infections or so I thought. My therapy so far has included zylocaine/lidocaine, elavil up
to 30 mgs per day but I could only tolerate 20 mg, 16 local injections of interferon into
the vestibule to treat subclinical hpv which had no effect on my vulvar pain and gave my
the "flu" for 2 months. I have since quit the elavil since my body cannot
tolerate it and have begun searching for alternative medicine. Currently I am having
acupuncture treatments and taking Chinese herbs from a Chinese doctor. He feels confident
that he can treat this problem but says it will take time because the imflammation of my
vulva has been there so long. This therapy is very expensive since my insurance does not
cover it but my husband and I feel it is worth it to try anything before the last resort
of vulvectomy and vaginal reconstruction. Acupuncture is medically documented in Western
medical journals to provide effective relief of some kinds of pain and we're hoping this
is one of them. I'm wondering if anyone else has tried acupuncture with success or not for
this condition because I can't find any info about it. I will be monitoring this site for
any clues to this horrible chronic problem. Oh, by the way, I mentioned before that I have
also had a tailbone injury. Isn't that ironic??! Good luck to everyone and try to keep a
positive attitude!
- Signature:
- Melanie
- EmailAddress:
- melgibbs@erols.com
- Date:
- 10/23/97
Comments
I am looking for doctors in the San Francisco area that are
familiar with endomeitrosis and vulvadynia. I would also like to be added to your list
server.
I am 26 years old, married, have had vulvadynia for 4 years,
and endomeitrosis since I was 18.
I really appreciate the information on this page. Thank you
so much!!!
- Signature:
- Justine
- EmailAddress:
- Casucci26@aol.com
- Date:
- 10/23/97
Comments
I have posted in the fist book about the end of June. I just
went to see my doctor in Philadelphia where I had my surgery, and I'm better than new. I
am still pain free, it'll be 3 years this Christmas. The only thing I have to worry about
now is PMS. I suffered with VV for almost 6-7 years. I was on Elavil and had interferon
treatments. It helped clear up some red spots I had, but I opted for surgery. It was the
non-laster kind. Never do laser surgery. I had a partial Vulaectomy with reconstruction.
This is a great source of information and education. Networking and sharing information
about this disease is the key to finding treatments that work. Please add me to your list
server. Keep up the good work.
- Signature:
- Lisa
- EmailAddress:
- Date:
- 10/24/97
Comments
Thanks for this great web site! I was diagnosed with
vulvodynia about 3 years ago but have had it for probably about 12 years. Like many others
who've written here, I think it all started with a series of bladder infections that led
to antibiotic-use and then yeast infections. I have had some success with the treatment my
doctor and nurse practitioner have given me...including a couple of laser surgeries with
very gentle lasers (like the ones they use on babies with port wine stains). In the past
year I have been able to have intercourse a few times--yay!!! To those women who are
having sexual problems, I want to offer a word of encouragement. I, too, lost all interest
in sex because of the pain I was having. My husband (who was then my fiance) and I went
from having a great sex life to a kind of mediocre one to none at all. I was so upset
about sex that even seeing other people kissing made me feel nauseous. Now, after lots of
expensive therapy and some healing, we are getting our sex life back. Once I actually
started feeling well enough to try sex, my nurse practitioner suggested I try some
testosterone shots to give my interest level a boost. It definitely worked! I also found
that I liked driving fast, all of a sudden, and had an uncontrollable urge to channel surf
with the remote control :-) After the testosterone shots were done, the level of interest
in sex went down somewhat, but not all the way. For those who have discomfort after sex, I
have a couple of suggestions-- I noticed that my skin gets very irritated by Astroglide
(which had been suggested as a good alternative to KY Jelly,which was also irritating).
Since then, I've tried pure coconut oil (you can get this at the health food store), and
that was better but not perfect, and then Crisco, which sort of worked and also gave us a
few good laughs, something that has been missing in the bedroom for a long time. Next I'm
going to try vegetable oil. Also, for condom users, try the polypropylene (sp?) ones
instead of the latex ones, but only if you feel absolutely certain there is no chance of
HIV infection as I believe they haven't been shown to be as good a barrier for the HIV as
the latex ones. I had much less irritation during the days following sex with polyprop.
ones than with the latex ones. My nurse practitioner said she has ordered some pure aloe
vera gel to use instead of KY Jelly when examining her vulvodyia patients. I may try that
as a lubricant, also (I found some at my health food store--be careful when buying this, a
lot of the products say they are pure aloe vera but then it turns out they have a teeny
bit of something else in them). Other stuff that has worked: estrace cream has been of
some use; a specially compounded cream that my doctor orders, it has zinc oxide,
xylocaine, and antibiotics in it. These two creams are the only ones I have been able to
use on a long-term basis--others may work for a few days but eventually seem to cause more
pain. Making sure I get up at least once an hour when I'm at work (a desk job). Not
crossing my legs. No pantyhose. Wearing my underwear inside out so that the seam that
occurs just where the clitoris is goes on the outside instead of the inside. I never use
any soap to wash my vulva--just warm water. Putting a towel in the bucket part of my car's
bucket seat so that I'm not sitting with my vulva rubbing against the seat. Good luck to
everyone!
- Signature:
- Chelsea
- EmailAddress:
- mnelson@intercoast.com
- Date:
- 10/26/97
Comments
Please add me to your list server.
- Signature:
- Vicki E. Jones
- EmailAddress:
- vjmmm@inforel.com
- Date:
- 10/28/97
Comments
Howard:
My concerns are as a patient. I just posted two notices to
the postings site, and am eager to receive input. I see two specialists in Chicago - Dr.
Ronald Meltzer and Dr. Lane Mercer, his associate. They know a great deal, but were not
familiar with Estriol, natural micronized progesterone (prescription items, due to my
sensitivities to usual items, and ovaries being removed 5 years ago)until I came along and
told them that is what I take.
In my case, I suspect a tie-in between FMS (fibromyalgia
syndrome) and the Vulvodynia. I have so many sensitivities that anything can set it off,
and there are many things I can't take or use for it. Please read postings.
Web site, chat group, and the entire URL www.vulvodynia.com
are very welcome, and the interaction may eventually provide a solution for people like
me. Of course, getting out of my present living situation would help, too. The stress
level is pretty bad. Don't have the finances to do it yet, though.
Thanks for the help! Please keep up the good work, and please
keep me posted on research, new treatments, etc. There CAN be new developments that get by
my doctors and any other doctor. No one can keep up with everything. If your site gets
worldwide input, maybe there will be a solution that we will all find out about.
Vicki E. Jones vjmmm@inforel.com
- Signature:
- Anon. (for now) in the N.W.
- EmailAddress:
- Date:
- 10/30/97
Comments
To Kristen of 10/21: Just started browsing the messages, and
noticed your inquiry about acupuncture and Chinese medicine. My wife (29 years old) has
suffered from vulvadynia for nearly two years now, with the usual ignorance from the
majority of the health care community and little or no relief from the usual treatments.
We also thought acupuncture was a good idea worth trying for this type of pain relief, but
couldn't find anything about this particular application. My wife had the acupuncture
treatments three (sometimes two)times a week, starting with about a half-dozen
"needles" in the feet, wrist, stomach, head, etc. (he was also shooting for
migraines and nausea). The needle count eventually increased to about ten. Though the
procedure was painless, sensitivity did increase after a few visits. This is normal. Also,
he prescribed an hearbal tea. This was not to drink, but to "hover" over, to
allow the steam to affect the vulvar area. Now it seemed quite difficult to squat like
this for any length of time, so I had the brilliant idea of taking an old toilet I had
left over from remodeling, and placing a container of the steaming herb inside. Much more
comfortable. Especially with something to read. Well after 20 visits, the Chinese Doctor
seemed surprised that none of this was working. So I guess for this particular patient,
with this Doctor, with this treatment, for this length of time, we didn't have any
success. Sorry about the discouraging news. Actual mileage may vary, however, and we
sincerely wish you good luck with your treatment. It might have just required more time.
Let us all know how it goes. By the way, has anyone out there tried hypnotherapy for pain
relief in this situation???
- Signature:
- Holly
- EmailAddress:
- hdnsupa@up.net
- Date:
- 10/31/97
Comments
I have had vulvodynia, interstitial cystitis and irritable
bowel for 14 years now. I have tried so many different things. I went to a homeopathy
doctor and did the drops under the tongue and then he told me I was fine but when I told
him I still had all this burning in my vulva and urinage urgency and frequency he told me
that that is what happens after you have 3 babies. What a joke that was. I then went to
another doctor who put acid on my vulva and had me come back 3 days later and peel the
dead skin off and do it again. I had to urinate in a tub of water for 6 weeks after. That
was pure torture. I also had 2 laser surgeries which only worsened the Interstitial
cystitis. I did the yeast connection thing with no improvement. I had my urine checked by
Dr. Solomons for high oxalates and was found to have this and tried the low oxalate diet
and caliclum citrate, but after 1 1/2 years I did not respond and quit. I also went to
enviromentalist-clinical nutritionist and allergist and had all kinds of hair, blood and
allergy testings. I was told I was the healthiest person to walk through his door, but I
was found to be allergic to trees and grass and was given a bunch of vitamins and allergy
shots to take. I did this for about a year and still did not respond. I have also tried
saunas because I was told I was full of toxins and this would help me sweat it all out. I
have been seeing a doctor now who is doing contact reflex analysis, which is a way of
testing your bodies electricity to find any nutritional problems. I have been doing this
for 4 years with very little success. I was wondering if anyone else has tried this. I
also am thinking about trying Dr. Solomons again as he has some different treatments now.
Has anyone had any success with ox absorb or guafenisen (spelling) . I don't know where to
turn. I have a very understanding husband, but it hurts me so bad not to be able to have
intercourse with my husband. I even hate to watch any love scenes on TV as it makes me so
depressed. Any information would be helpful. Thanks.
- Signature:
- Pietr Stroeker
- EmailAddress:
- pstroeker@nonsequitur.com
- Date:
- 11/1/97
Comments
RE: OILY DISCHARGE: As the owner of a 1974 Vulvo, I feel that
I speak from experience. I have had nothing but problems with this Swedish lemon. Whenever
I drive, oil sprays from under the hood, and streaks my windshield. I wish the best to all
the others having problems with their Vulvos.
- Signature:
- Clare
- EmailAddress:
- clare.rowell@falmouth.ac.uk
- Date:
- 11/1/97
Comments
Four years ago, after trying to explain to, doctor after
doctor that the pain was real. I was diagnosed as having Vestibulitus.I am only 21 with an
understanding but frustrated Fiancee. I have tried over those four years, so many creams,
tablets, solutions I can hardly remember which ones, just the fact that they didn't work.
The only thing that I have found to work for a short period of time was a wheat free diet,
however, after 2 months, my problem returned almost worse. I am now being advised to have
a full vestibuloctomy, which I have been puting off for over a year. On November the 5th I
am seeing my doctor, to tell him wether or not to have the operation, I would really
appreciate someone to talk to that might of had it or know of someone that has. Until I
found this sight I felt alone and isolated. I would be grateful for someone to return my
message before I have to go and consult with my doctor. Thankyou for your time, I hope
someone out there is feeling better today. .
- Signature:
- Beth
- EmailAddress:
- thaanumet@juno.com
- Date:
- 11/2/97
Comments
First, I would like to say thank you for this guest book!
I am 29 years old and have been suffering from vulvodynia for
about 9 years. Like most of you, I have been through many, many treatmants with no
success. As a last resort, I had a vulvectomy done about a year and a half ago. I had
success for about 2 months and then my symptoms returned. My doctor removed three more
areas after that and now I have more pain, irratation and burning than I did before the
initial surgery. I am now trying something new. I take 800 mg of Motrin and wait 1 1/2 to
2 hours and then have intercource. This has helped me tremendously. I realize it is not a
cure and it isn't always fun to have "planned" intercource, but it seems to help
with the inflamation. Has anyone else tried this?
- Signature:
- Rhonda D.
- EmailAddress:
- RonRSD@aol.com
- Date:
- 11/3/97
Comments
Thank you Dr. Glazer for creating this site! Please add me to
your list.
I am 45 and was diagnosed with vulvodynia 11 yrs. ago. After
about a year of head scratching by my gyn., and being treated with numerous anti yeast
remedies, I finally hit upon a specialist, quite accidentally, who was able to diagnose
me. On a scale of 1 to 10, I was told my pain level was about a 9...I couldn't imagine
what a 10 would be like! I was in constant agony! Forget about sex....walking, sitting,
just living was a nightmare...even a peaceful night's sleep was a memory. Out of
desperation I finally opted for a vestibulectomy. It didn't work for me, in fact, made it
worse, if that was possible. And to make matters worse, the gyn. who performed the surgery
had the audacity to say that he did such a beautiful job, and I just didn't appreciate
it...didn't do much for my mental state, let alone the physical. Then almost 3 yrs. ago, a
cousin sent me an article that appeared in the NY Times by Jane Brody, featuring the
research being done by Dr. Clive Solomons regarding oxalates, and the Vulvar Pain
Foundation. I felt hope for the first time in years, and more importantly, found out I
wasn't the only woman in the world suffering from this terrible condition. I immediately
contacted the VPF and Dr. Solomons, had my urine tested and started the calcium
citrate/low oxalte diet in March of '95. The progress was extremely slow...almost
imperceivable...but after a year I could look back and see the improvement. I have been on
this regimen for over two years now, I am not cured, but certainly have improved. There
are times now when I am almost "normal." But there are times of flare up also,
especially right before my period. Also, sitting for any length of time can produce
discomfort, as can walking. I have found A+D Ointment and ice packs used at bedtime helps
during flare ups. For research purposes...I am in good health otherwise (other than
gaining weight due to lack of physical activity and eating from frustration), can't recall
any tailbone or other spinal injuries in my past. I do remember always having vulvar
sensitivity from time to time, even as a child, from soaps...and after I was married to
condom lubricants, and even a slight stinging from my husbands semen when trying to get
pregnant. But my worst nightmare has come true....my 23 yr. old daughter has it too!! She
doesn't have it as severely as I did, she started the citrate/diet about a month ago. She
is getting married in May, I am so afraid for her. I have a 19 yr. old daughter also....I
pray she will escape this horror!
For anybody considering a vestibulectomy...please try any and
all other options first!!! Give them time to work...even though I know it's hard to be
patient...please give all noninvasive options a chance!
I have noticed several other posters from America OnLine...I
would be very interested in setting up a private chat on AOL to share info, encourage,
support, make new friends who understand. If you are interested in same, please contact me
at RonRSD@aol.com God Bless you all!!!
- Signature:
- Mike (for my wife Darlene)
- EmailAddress:
- Darl425@aol.com
- Date:
- 11/4/97
Comments
First of all, I am writing this for my wife because she is in
too much pain. She has intense burning (especially at night) in her vulva. Her symptoms
started a few weeks ago after being treated for a UTI (twice) and later a yeast infection.
She was on several antiboitics. The doctor has not found any infections or causes for this
condition. My wife has become frustrated because the doctors have trivalized her pain.
Last night my wife was up the entire night crying with pain.
She has been averaging only a few hours of sleep each day. I have done extensive research
on the internet on this condition and she has has tried all the recommendations
(hypo-allergic laundry detergent and soaps, low oxalate diet, calcium nitrate, panty
liners, A&D oitment, grape extract, acidophilus, St. John's Wart). We know it has only
been a few weeks but based on the other comments she has read, she has become really
depressed because this could last for years. She has become very weak from the lack of
sleep and food (she is afraid to eat anything with oxalate and frequently gets nausea).
I guess I'm looking for positive feedback for my wife from
women who have controlled this illness. Please email my wife back so my wife can have some
hope for the future.
Thank you Doctor for having this web site, it has helped to
give us a lot of information. Many women have suffered several years without knowing what
the problem was, I am glad my wife has been able to quickly diagnose her problem.
I pray for all of you women suffering out there and thank you
for sharing your comments.
- Signature:
- Laura
- EmailAddress:
- lvickery@mail.veda.com
- Date:
- 11/4/97
Comments
Hi.
I am 35 years old, and have been diagnosed with Vulvodynia,
too, but I finally have it under control after 6 years. I am by no means cured, and I have
bad days and sometimes weeks, but I have learned to cope with the discomfort and have
overcome the obsession to find a total solution. The expectations, hopes and let-downs put
my emotions in too much of a roller-coaster ride to continue the course I was going. The
first major turning point for me was finally being diagnosed with SOMETHING! The second
was finding a day-to-day regime that I could live with (and my husband, too). I listed my
tips below.
What I am looking for is a doctor in the San Diego area who
works with patients like me (us). I have changed doctors so many times over the past 6
years and have not found one who specializes in this area. Fortunately, I had a doctor who
heard about vulvadynia and diagnosed me correclty (many have not...), but I want more
expertise. I am about to go on my annual Pap & Pelvic and want to start the year with
a good doctor. Any leads out there? Please RSVP.
Anyway...After years of yeast infection medicine
(prescription and over-the-counter), hormone creams, anti-depressants, and whatnot, I have
found the following things help me the most. Maybe these ideas will help someone else.
a) Take Benadryl EVERY DAY. It decreases the itching and
swelling considerably for me when I take 50 mg in the morning.
b) Don't wear any kind of pants that have a seam that you can
feel riding you when you sit, whether those pants are tight or not. I have baggy jeans
that ride me every time I sit down.
c) Avoid panty hose, too. (I love Legg's thigh highs...those
don't have the big wide plastic strip around the top like so many others do.)
d) Use baby soap to shower, not just some hypo-allergic soap.
I found it to be totally painless, whereas even Dove and Oil of Olay burned a little).
Rinse with cooooooool water, too.
e) Use baby laudry detergent for your undergarments.
Also, for those of you out there who think they'll never have
sex again, keep up hope. I can't explain it, but I have less discomfort after having sex
than before, even after a couple days. Maybe it's strentheing muscles or using under-used
glands, ???) Using KY-Jelly helps, too. It's messy if you use too much, but it can be
kinda fun, too.
And, Howard, your web-site is wonderful. Just reading the
comments shows that there are people who are comforted just by knowing they are not alone,
and who can benefit from the experience of others. Thanks.
- Signature:
- Ninski
- EmailAddress:
- Ninskiland@aol.com
- Date:
- 11/5/97
Comments
Folks...I need your help. My mother has been sick since March
6, 1997. Biggest symptoms are:a constant burning in her vagina, which also switches back
to her rectal area. Quite often when that subsides she has a burning sensation in her
mouth. She has now seen 14 different doctors. She has lost 30 pounds and is in constant
pain in her vulva/vaginal area. My mother was a go-getter and at 75 could outdue me. She
is totally depleted and has done many creams, etc. One doctor put her on 28 days of
Diflucan and it almost killed her. Now they are trying to treat it as a hormonal problem
and have her on premarin and progesterone. Most doctors have tested her and say there is
nothing showing up as an illness--some have referred her to a psychologist. I have quit a
job and everything to dedicate myself to helping my mother get through this--on top of all
of it she is legally blind so she cant even get herself to all these appointments. Any
help or info would be so welcomed. We are at the end of our ropes ! Thanks so much.
Ninskiland
- Signature:
- Lori
- EmailAddress:
- squidbeak@hotmail.com
- Date:
- 11/5/97
Comments
7 months ago I was diagnosed (finally!) with vulvodynia after
years of treating disorders that weren't there. Now, after following a low-oxalat e diet I
have a 95% cease of pain, but find intercourse still very difficult and uncomfortable. My
doctor has given me the choice of continuing on the current treatment, or going with one
of two types of surgery: hexascan/laser treatment or excision of the bartholin's glands
& vestibule. I would like more information on these treatments, particularly the
surgery, before making a decision. My doctor doesn't seem willing to give me more
details...can anyone out there (doctor OR patient) help?
What are the lasting effects, downsides, etc.?
- Signature:
- EmailAddress:
- albeth@worldnet.att.net
- Date:
- 11/11/97
Comments
I am eternally grateful for this web site. I am 34 yrs old
and have had vulvodynia for 8 years. I believe it resulted from contracting the HPV virus.
I had vaginal warts removed with liquid nitrogen and feel that the skin around the opening
of the vagina never healed properly. I then of course had the usual bout with yeast
infections and finally regained control (with the yeast infections) by modifying my diet:
no sugar and acidphilis therapy. Intercourse is still and always painful, however during
ovulation it is less painful, hence my husband and I were able to get pregnant, luckily
with minimal tries.
I am now 8 months pregnant and my question is this:IS THERE
ANYONE OUT THERE WITH VULVODYNIA WHO HAS HAD A SUCCESSFUL VAGINAL DELVERY? I have
developed a quite a fear- not neccessarily of labor, but of feeling that I have lost so
much elasticity over the years that I will in no way be able to stretch enough for the
baby to pass through without terrible pain and ripping. Oh and I plan on having natural
childbirth.
- Signature:
- Ninski
- EmailAddress:
- ninskiland@aol.com
- Date:
- 11/14/97
Comments
Dear Folks-I am in desperate need of an answer from anyone
who is suffering from Vulvodynia or vestibulits, or if there are any medical doctors who
see this posting have heard of this symptom: Along with a severe burning sensation that my
mother has that moves from the vaginal area to the rectal area, she also has a burning
sensation in her mouth when the vaginal area/and or rectal area stop burning. She says it
feels as if the pain is "playing tag" with her body. Has anyone heard of this
disease affecting the mouth. It seems it is a bit like thrush possibly. I really am in
need of help because her doctor is ruling vulvodynia/vulvavestibulitis out because of the
mouth situation. Any any any help would let me sleep a bit at night.
- Signature:
- Lori
- EmailAddress:
- Lechowski@AOL.com
- Date:
- 11/16/97
Comments
Wow. I am exhausted after reading all of these entries. So
many similarities to what I have been going through. I have not been diagnosed with
vestibulitis, but now I know I need to see a specialitst. Also, guess what? I have had
genital herpes for about 7 years. The first outbreak, and others afterward, was on my
TAILBONE. I had very large, painful blisters there. Now, when I have prodromal symptoms,
symptoms that tell me to get my act together or an outbreak will arrive, the area around
my tailbone aches. I have also been reading about neuralgia, explained to me as damage to
the nerves, being associated with herpes. Anyone else with herpes that has chronic pain?
Other similarities: treaeted about 5 times for bacterial
infections- consecutively, pain when wearing certain jeans or snug clothes, painful
intercourse, reactions to different soaps, needing to "breathe" after too many
sanitary napkins have been used, drs. not understanding, . . .
My husband and I, too, have seen a sex therapist. I don't
have any increased desire, but my mind set is different. Sex doesn't just mean
intercourse. We can be sexual in other, more gentle ways. This is difficult for me, and my
husband, to understand. Intercourse causes a burning feling for me, too. Yes, urination
afterward burns sometimes.
The cotton, reusable sanitary napkins are fabulous!
I don't quite get what the listserve is. I think I want to be
put on it. I'm a bit confused.
- Signature:
- Lori
- EmailAddress:
- Lechowski@AOL.com
- Date:
- 11/16/97
Comments
Wow. I am exhausted after reading all of these entries. So
many similarities to what I have been going through. I have not been diagnosed with
vestibulitis, but now I know I need to see a specialitst. Also, guess what? I have had
genital herpes for about 7 years. The first outbreak, and others afterward, was on my
TAILBONE. I had very large, painful blisters there. Now, when I have prodromal symptoms,
symptoms that tell me to get my act together or an outbreak will arrive, the area around
my tailbone aches. I have also been reading about neuralgia, explained to me as damage to
the nerves, being associated with herpes. Anyone else with herpes that has chronic pain?
Other similarities: treaeted about 5 times for bacterial
infections- consecutively, pain when wearing certain jeans or snug clothes, painful
intercourse, reactions to different soaps, needing to "breathe" after too many
sanitary napkins have been used, drs. not understanding, . . .
My husband and I, too, have seen a sex therapist. I don't
have any increased desire, but my mind set is different. Sex doesn't just mean
intercourse. We can be sexual in other, more gentle ways. This is difficult for me, and my
husband, to understand. Intercourse causes a burning feling for me, too. Yes, urination
afterward burns sometimes.
The cotton, reusable sanitary napkins are fabulous! In case
it is important, I have ALWAYS had irregular periods - much bleeding for a long time.
Anyone else have that correlation?
I don't quite get what the listserve is. I think I want to be
put on it. I'm a bit confused.
- Signature:
- Lynn
- EmailAddress:
- vcalfee@uga.cc.uga.edu
- Date:
- 11/18/97
Comments
Howard,
I need to know of some other doctors that specialize in this.
Dr. M. McKay at Emory in Atlanta is the only one I'm aware of. If anyone else out there
knows, please e-mail me. Thanks!
- Signature:
- ryan
- EmailAddress:
- mariann@gravesfowler.com
- Date:
- 11/18/97
Comments
Like most others I've read here, I am very thankful to have
tripped over your web site in my search for information on vulvodynia. I have been dealing
with the effects of it for almost two years and it is a constant struggle as you all know.
It feels strange writing this and posting it for the world but it is also refreshing to be
able to "talk" about it just the same. I'm not sure the cause, but like many of
you, my pain coincided with treatment for what I thought was a yeast infection after
having taken antibiotics. At the same time I was training 3-5 days a week for a long
distance bicycle ride which I think might have contributed. I have not cycled for over a
year now but my pain has not diminished. Of course, the difficulty of diagnosis is as
frustrating as the problem. I was treated by several doctors, the second of whom decided I
had HPV (although she wouldn't do a biopsy to confirm it -too painful, she said). It took
me almost a year before I found a doctor in my area who knew about vulvodynia and did a
biopsy to confirm it wasn't HPV. I've tried baths, applications of Crisco (yes, I thought
he was crazy, too - and it took forever to get that "greased muffin pan" smell
out of my panties when it didn't help the pain), and various anti-depressants. I am still
trying a third anti-depressant (Nortryptline). The side effects (nightmares, constipation,
no libido, dry mouth) are not so bad that I'm ready to give up yet (although my partner
would love to sleep though a night without me kicking out or yelling something). I
actually had six consecutive days last month without pain. It didn't last but I'm hoping
that's progress. I have noticed that my pain lessens right before my period and is worse
right after. I tried going on birth controls pills to see if the hormones had any effect
and they did not. But I have a growing suspicion that it could be related to something
hormonal. Anyone care to comment? I am 38 and don't think I am anywhere near the start of
menopause. My problem has been diagnosed as pudendal neulragia so I'm also wondering if I
could have damaged that nerve somehow in my training. I spent about a year cycling with
the culmination being a 250 mile ride from Philly to DC and then another century ride
(100miles) after that. I know some of you have mentioned injuries to your tailbones. Could
these be related? Of course, I always come up with more questions than answers - as we all
seem to have. Thanks for letting me contribute. I'll look forward to continuing to read
others concerns and contributions.
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